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User
Posted 24 Nov 2015 at 07:51
Hello,

My Dad is being tested for prostate cancer. He's 79. I don,t fully know or understand what's going on and why and I don't live near my DAd, which makes things worse. The sequence of events are odd. his first biopsy appointment was cancelled and then he was called in at short notice because the doctor had "some time" only to sit waiting in his gown to be told the biopsy couldn't be done after all. The scans that were ordered at the same time as the biopsy will go ahead, but they've been cancelled and rescheduled too, so who knows. Whatever, the hospital is likely to miss its 62 day target to first treatment (if treatment is necessary) the way they're going.

I'm not doing very well coping with anxiety over this. This morning I contacted Mind in desperation. I also contacted the support nurses yeasterday through this site. The man who replied did help me to feel a little better but I so scared again. I wonder how other people cope? I have a phobia of doctors, so going to my GP isn't an option.

User
Posted 24 Nov 2015 at 11:15
Dear Dee Jay

Your experience so far, sadly mirrors the experiences that many of us on here have had. The diagnosis is a very difficult time and the 'treatment' your dad has endured so far is unacceptable.

When is your Dads next appointment? I suggest that someone goes with him to try and get as much information about his diagnosis so far, such as PSA scores and schedules tests.

The comments made by your GP are unacceptable and unfair. But for now, I would concentrate upon getting a firm diagnosis and going forward, treatment.

You also need some support, I suggest that you download the toolkit on this site that will give you an undertanding of the illness and be in a position to help your Dad when he gets the information that he requires.

Once you have this information you can come back to us for further advice.

Kind regards

Alison

User
Posted 24 Nov 2015 at 13:37

Hi Deejay,

I too was not impressed with the GP saying it was Dad's responsibility to phone in for result of PSA test! Not everyone can, or wants to chase up tests. Thats the whole point of going to a doctor, you expect they have the skill and sense of responsibility to flag up abmormal results. However I have long been referring to it as a 'do it yourself' service though not everyone has this experience. You are experiencing the sort of roller coaster of feelings that go with the possibility of a cancer diagnosis, not helped by the delay in procedures you describe. It is a life changer but you will get lots of support here from those of us who have been through this. The specialist nurses and the Macmillan helpline are good resources, do you have any local support services you can access to talk to someone, your needs are important too ! We have members here with cardiac complications who have still had a range of treatments and diagnostic options, so it doesnt rule these things out necessarily for your Dad. This site was a lifeline to me when my partner was diagnosed so do feel free to post your feelings, there is always someone around to respond even if only to say 'Hi' and welcome you,

 

Regards, Fiona.

User
Posted 24 Nov 2015 at 15:07

Hi Deejay,

Unfortunately your Dad is one of a significant number of men who have not been well served within the NHS. He is of a generation when often men do not readily complain or push for attention and just accept what they are offered and when. There are cases when it pays to go against the grain and push for answers. I am of similar age to your Dad and have learnt that this is sometimes necessary either directly or with the help of a close person. It is not just a question of possibly delaying treatment but the anxiety of a man and indeed his family knowing where he stands and over an extended period. Your Dad's other problems may have a bearing but this should have been explained and why planned procedures where cancelled or delayed. I would want a full explanation of the position if it was me.

Without the benefit of the tests and scans being done and a prognosis we don't know your Dad's situation. However, more men of his age will have PCa than don't have it and most die with it than of it.

Do let us know more when you can.

Barry
User
Posted 24 Nov 2015 at 22:47

I am going to go against the grain a little from my friends' replies above. The fact is that 70% of 70 year olds and 80% of 80 year olds have some cancer in their prostate and yet for most, this causes no problems at all. The fact that he has got to almost 80 suggests that this is not a hugely aggressive cancer (if it is indeed cancer). If he is eventually diagnosed, it may be that your dad decides that he would not want treatment anyway - but that is a decision you can help him to make if and when you have all the information.

The most useful bit of information right now would be his actual PSA score last year and then his most recent one - the rate at which the PSA rises is often a good indicator of how much urgency there might be. You say it is high but 'high' could be anything from 4.0 to 12,000!

It seems a good idea to scan first and then biopsy afterwards - many hospitals are moving to this protocol as the scan will help the doctor to decide where to aim the needle when he takes the biopsies.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Nov 2015 at 09:25

Sorry your Dad has not had the sort of treatment many of us expect. But LynEyre is correct, it is better to do MRI scan before the biopsy. In my case I was told at my initial urologist consultation that they would decide whether to do a normal or a template biopsy depending on the MRI results - and indeed it was changed to a template immediately they had that. All this was done very quickly - 2 weeks after GP referral to urologist appointment, MRI and biopsy in the next couple of weeks. Diagnosis 6 weeks after referral, hormone therapy started immediately, RT due January/February.
But at 79 there may well be other reasons for them cancelling appointments and delaying things. You do really need to find the full story, preferably from the hospital rather than from your dad.

(and as for men who don't wear their hearing aids, I groan. Mine stay in from breakfast till bedtime and I wouldn't be without them. Just upgraded to the latest NHS ones, I have no complaints with that side of the NHS).
Dave

User
Posted 25 Nov 2015 at 13:51

Good point of course, Lyn. If it is any consolation, Deejay, my late partner's adoptive father was diagnosed with slow growing PCa in his seventies, monitored yearly and treated, I think, with Finasteride. He is now 95. Wait til all the tests are done then you will all some clearer evidence to go on. An MRI will be far less traumatic than a biopsy for your Dad also,

 

Regards, Fiona.

User
Posted 25 Nov 2015 at 19:40

Hi Dee Jay,

We had a similar scenario with my mum a couple of years ago, she was 88, sufferring from vascular dementia, hard of hearing etc.

When her blood tests revealed that she was anaemic the doctors suspected bowel cancer, her GP took me to one side and explained that while he could refer her for all sorts tests such as a barium enema, there was little point doing so because had the doctors located and identified an intestinal tumour, mum was not strong enough to cope with treatment, accordingly why put her through the stress and indignity of the tests?

I don't know if your dad can have a TRUS biopsy while he is on warfarin, the internal bleeding that the TRUS causes is quite bad enough for those of us with thick unthined blood.

There is also quite a bit on the Internet about otherwise fit guys being hospitalised by the TRUS procedure, it seems that in places like Canada and Sweden there is a growing problem with antbotic resistant infections.

My mum died, 18 months later, peacefully in her bed, with her dignity intact, and we never knew whether she had bowel cancer, her death certificate said it was cardiovascular disease that did for her.

:)

Dave

 

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User
Posted 24 Nov 2015 at 09:54

Just been (over?)thinking.

My Dad has angina, cardiac arrhythmia (for which he takes warfarin) and at his first urologist consultation had high blood pressure (he takes meds for this but his GP hasn't checked his blood pressure for some time). I wonder whether any of these issues resulted in the decision not to biopsy. The first consultation was inconclusive as far Dad's prostate is concerned, but then it wuld be. PSA, DRE provide probabilities rather than certainties I would have thought.

Worse case scenario: they think there's cancer and they suspect it's spread, hence the less than measured approach to diagnosis.

There's another worrying aspect. His doctor didn't tell him about a high PSA reading over a year ago. When quizzed, the GP said it was Dad's responsibility to ring in for results. It was this PSA result that resulted in the recent 2 week referral.

User
Posted 24 Nov 2015 at 11:15
Dear Dee Jay

Your experience so far, sadly mirrors the experiences that many of us on here have had. The diagnosis is a very difficult time and the 'treatment' your dad has endured so far is unacceptable.

When is your Dads next appointment? I suggest that someone goes with him to try and get as much information about his diagnosis so far, such as PSA scores and schedules tests.

The comments made by your GP are unacceptable and unfair. But for now, I would concentrate upon getting a firm diagnosis and going forward, treatment.

You also need some support, I suggest that you download the toolkit on this site that will give you an undertanding of the illness and be in a position to help your Dad when he gets the information that he requires.

Once you have this information you can come back to us for further advice.

Kind regards

Alison

User
Posted 24 Nov 2015 at 13:37

Hi Deejay,

I too was not impressed with the GP saying it was Dad's responsibility to phone in for result of PSA test! Not everyone can, or wants to chase up tests. Thats the whole point of going to a doctor, you expect they have the skill and sense of responsibility to flag up abmormal results. However I have long been referring to it as a 'do it yourself' service though not everyone has this experience. You are experiencing the sort of roller coaster of feelings that go with the possibility of a cancer diagnosis, not helped by the delay in procedures you describe. It is a life changer but you will get lots of support here from those of us who have been through this. The specialist nurses and the Macmillan helpline are good resources, do you have any local support services you can access to talk to someone, your needs are important too ! We have members here with cardiac complications who have still had a range of treatments and diagnostic options, so it doesnt rule these things out necessarily for your Dad. This site was a lifeline to me when my partner was diagnosed so do feel free to post your feelings, there is always someone around to respond even if only to say 'Hi' and welcome you,

 

Regards, Fiona.

User
Posted 24 Nov 2015 at 14:36

Thank you both for replying.

I asked around and looked online and I think many, perhaps most, GP surgeries will contact patients with abnormal test results. Anyway, all GPs have a duty of care to all their patients.

I will try to go up to see my Dad soon and gather as much info as I can. I'm worrying in the dark at the moment. Trouble is, he won't wear his hearing aids, so he misses at lot of what's said, and may not fully understand anyway. My nephew goes with him for tests. I'll get him to probe a little deeper into what's going on.

My best wishes to you,

Denise

User
Posted 24 Nov 2015 at 15:07

Hi Deejay,

Unfortunately your Dad is one of a significant number of men who have not been well served within the NHS. He is of a generation when often men do not readily complain or push for attention and just accept what they are offered and when. There are cases when it pays to go against the grain and push for answers. I am of similar age to your Dad and have learnt that this is sometimes necessary either directly or with the help of a close person. It is not just a question of possibly delaying treatment but the anxiety of a man and indeed his family knowing where he stands and over an extended period. Your Dad's other problems may have a bearing but this should have been explained and why planned procedures where cancelled or delayed. I would want a full explanation of the position if it was me.

Without the benefit of the tests and scans being done and a prognosis we don't know your Dad's situation. However, more men of his age will have PCa than don't have it and most die with it than of it.

Do let us know more when you can.

Barry
User
Posted 24 Nov 2015 at 22:47

I am going to go against the grain a little from my friends' replies above. The fact is that 70% of 70 year olds and 80% of 80 year olds have some cancer in their prostate and yet for most, this causes no problems at all. The fact that he has got to almost 80 suggests that this is not a hugely aggressive cancer (if it is indeed cancer). If he is eventually diagnosed, it may be that your dad decides that he would not want treatment anyway - but that is a decision you can help him to make if and when you have all the information.

The most useful bit of information right now would be his actual PSA score last year and then his most recent one - the rate at which the PSA rises is often a good indicator of how much urgency there might be. You say it is high but 'high' could be anything from 4.0 to 12,000!

It seems a good idea to scan first and then biopsy afterwards - many hospitals are moving to this protocol as the scan will help the doctor to decide where to aim the needle when he takes the biopsies.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Nov 2015 at 09:25

Sorry your Dad has not had the sort of treatment many of us expect. But LynEyre is correct, it is better to do MRI scan before the biopsy. In my case I was told at my initial urologist consultation that they would decide whether to do a normal or a template biopsy depending on the MRI results - and indeed it was changed to a template immediately they had that. All this was done very quickly - 2 weeks after GP referral to urologist appointment, MRI and biopsy in the next couple of weeks. Diagnosis 6 weeks after referral, hormone therapy started immediately, RT due January/February.
But at 79 there may well be other reasons for them cancelling appointments and delaying things. You do really need to find the full story, preferably from the hospital rather than from your dad.

(and as for men who don't wear their hearing aids, I groan. Mine stay in from breakfast till bedtime and I wouldn't be without them. Just upgraded to the latest NHS ones, I have no complaints with that side of the NHS).
Dave

User
Posted 25 Nov 2015 at 13:51

Good point of course, Lyn. If it is any consolation, Deejay, my late partner's adoptive father was diagnosed with slow growing PCa in his seventies, monitored yearly and treated, I think, with Finasteride. He is now 95. Wait til all the tests are done then you will all some clearer evidence to go on. An MRI will be far less traumatic than a biopsy for your Dad also,

 

Regards, Fiona.

User
Posted 25 Nov 2015 at 19:40

Hi Dee Jay,

We had a similar scenario with my mum a couple of years ago, she was 88, sufferring from vascular dementia, hard of hearing etc.

When her blood tests revealed that she was anaemic the doctors suspected bowel cancer, her GP took me to one side and explained that while he could refer her for all sorts tests such as a barium enema, there was little point doing so because had the doctors located and identified an intestinal tumour, mum was not strong enough to cope with treatment, accordingly why put her through the stress and indignity of the tests?

I don't know if your dad can have a TRUS biopsy while he is on warfarin, the internal bleeding that the TRUS causes is quite bad enough for those of us with thick unthined blood.

There is also quite a bit on the Internet about otherwise fit guys being hospitalised by the TRUS procedure, it seems that in places like Canada and Sweden there is a growing problem with antbotic resistant infections.

My mum died, 18 months later, peacefully in her bed, with her dignity intact, and we never knew whether she had bowel cancer, her death certificate said it was cardiovascular disease that did for her.

:)

Dave

 

User
Posted 27 Nov 2015 at 22:04

Thanks everyone for their kind replies. I'm slightly less panicky than I was when I first posted here but obviously I'm still very worried, but the info on this site and on this forum has been really useful.

Apparently, as I've now discovered, the consultant does want to do an mri before biopsy. The mri is booked for early Dec. But Dad had a bone scan this week, results not known yet. This is what really worries me, yet perhaps he had this before the mri because there's a shorter waiting time for bone scans. The biopsy, mri and bone scan were requested at the same time, which resulted in confusion and lots of letters from the hospital, including several duplicate letters, double booked procedures, cancellations and resheduled appointments. It's a shambles.

Anyway, the radiologist did a full body scan then asked my dad where it hurt, which had him confused because he doesn't have any pain, apart from a bit of arthritis. Also, he suffers mild urinary issues because he has bph, diagnosed some time ago. If he does have cancer, it's yet to give him any obviously physical problems.

Sorry to ramble on.

Hope to know more soon.

Thanks all,

Denise

 
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